To Aya...
亜也へ、
あなたと会えなくなって、もう一年が経ちました…
亜也？歩いていますか？ご飯が食べられますか？大声で笑ったりお話ができていますか？お母さんが側に居なくても、毎日、ちゃんとやっていますか？
お母さんは、ただただ、それだけが心配でありません。「どうして病気がアタシを選んだの？」「何のために生きているの？」亜也はそう言ったよね…
苦しんで苦しんで、たくさんの涙を流した貴方の人生がなんのためだったか…
お母さんは、今でも考え続けています…
今でも、答えを見つけられずにいます…
でもね、亜也、貴方のおかげで、たくさんの人が生きることについて考えてくれたのよ…
普通に過ごす毎日が嬉しくて、あったかいもんなんだって思ってくれたのよ…
近くに居る誰かの優しさに気付いてくれたのよ…
同じ病気に苦しむ人達が一人じゃないって思ってくれたよ…
貴方が、いっぱいいっぱい涙を流したことは、そこから生まれた、貴方の言葉たちは、たくさんの人の心に届いたよ…
ね、亜也、そっちでは、もう泣いたりしてないよね…
お母さん、笑顔のあなたに…もう一度だけ…会いたい…
To Aya,
It's already been one year, since I haven't been able to see you...
Aya? Are you walking? Can you eat? Are you laughing loudly, and can you speak? Even if your mother isn't at your side, everyday, are you doing well?
As for your mom, It's just, I'm not only worried about that. "Why did this illness choose me?" "For what purpose am I living?" You said such things, didn't you...
For what purpose was your life, in which you shed so many tears, suffering and suffering...
Mom, is still trying to figure that out...
Even now, I am unable to find an answer...
But you know, Aya, because of you, a lot of people began thinking about what life means...
They've started to think that these days that pass by normally are so wonderful, and warm...
They've started to realize that someone near them has given them kindness...
And people suffering with the same illness have began to think that they're not alone...
They did this all for you...
You shed lots and lots of tears, and born from those tears, your words... have reached lots of people's hearts...
Hey, Aya, over there, you aren't crying anymore, aren't you...
Your mom... even if it's only once... would like to see you there, smiling...
昭和63年5月23日午前0時55分
木藤亜也さん25歳で永眠
花に囲まれて 彼女は逝った
May 23rd, 1988, 12:55am
Aya Kitou Eternal Sleep at age 25
Surrounded by flowers, She departed us...
1リットルの涙
1 Litre of Tears...
(This is a page from Aya's actual diary, the reason it was called "1 litre of tears" was because every page's ink was so bled from Aya's tears, and some pages were almost illegible...)
Aya Kitou, Born in Toyohashi City of Aichi Ken (near Nagoya, which is also in Aichi), at age 14 was diagnosed with Spinocerebellar Atrophy, which is a disease where the cerebellum and the nervous system starts to destroy itself, leading to cerebral palsy, and can in some cases, lead to death. Due to things such as choking on your own saliva because you can't control your muscles in your mouth. It is an especially cruel disease, because the Cerebrum suffers no damage at all, and as it appears in people who have lived perfectly active lives, it's almost as if they are trapped within their own body, and have no control over what their body is doing to them.
From the age of 14, until she was 21 (and no longer able to write), she kept a diary, which is now published as a book "1 litre of tears" in Japan. Her words have touched the hearts of millions, as the book was a best seller in Japan, and has projects online currently to translate it into many different languages. There was also a Movie, and a drama made, which is a fiction based on the true events.
One day as Aya was walking to take the highschool entrance exam, she fell, and hit her chin severely. The doctor that treated her noticed no wounds on the hands (normally, a person would put their hands in front of them if they fell) and did some tests, as well as an MRI... and told her mother that her daughter had the disease known as 「脊髄小脳変性症」(Sekizui Shounou Henseishou) or "Spinocerebellar Atrophy"... At the time there was no way to treat the disease, and her mother was told to do what she could to make the best of the time she had left to move freely...
After having gotten into a very difficult highschool, her doctor recommended she start a diary, and write about her life with the disease, so that he could see her symptoms... As she began to atrophy more and more, her friends, and the people at the school were extremely helpful and supported her all the way.
Eventually, her homeroom teacher recommended she transfer schools, stating that their school was not equipped to accomodate such a person. Aya, contemplating the burden that she will likely become to her friends and the people at the school, decided to change schools to a Special Care School...
Her life in the dorms at the Special Care School was good, and the school had a play, in which she got to be back stage, she said 「いつもいつも人のやるのをみてばっかり。でもやれたんだ」"I always saw people doing it, but I was also able to do it"... Having graduated the school, she began a life of going back and forth from her home to hospitals. Beginning rehabilitation, she had a hope of entering society...
One day, she had written in her diary, in big, almost illegible letters (the symbols are a bit complicated) ”わたし結婚できますか。" (watashi kekkon dekimasu ka?) "Will I be able to marry?" and the doctor answered to her "I don't think you will be able to...", and she wrote "Thank you for telling me the truth"...
After watching the entire drama, reading the first couple chapters in the book, and looking up information on Aya... I feel like even though I never met her, that she is an important person in my life. All those things she went through, all the pain, I just wish I could've helped her... What hurts me the most is that I know what it's like to want to walk one way, or grab something, and have your muscles do something completely different....... Luckily I don't have Atrophy, and it's just dormant Cerebral Palsy... and thanks to the rehabilitation I had for a large part of my life, I'm able to live normally, and hug the people I love, and tell people I love them... In the end of her life, she had to use a board with the Japanese alphabet on it and point to letters to speak...
We take so much in this world for granted... but I'd like to think that Aya's life wasn't meaningless, and that it touched me deeply to read her words, and to learn about the hardships she had to go through... I just wish I could have met her and told her thank you...
あなたと会えなくなって、もう一年が経ちました…
亜也？歩いていますか？ご飯が食べられますか？大声で笑ったりお話ができていますか？お母さんが側に居なくても、毎日、ちゃんとやっていますか？
お母さんは、ただただ、それだけが心配でありません。「どうして病気がアタシを選んだの？」「何のために生きているの？」亜也はそう言ったよね…
苦しんで苦しんで、たくさんの涙を流した貴方の人生がなんのためだったか…
お母さんは、今でも考え続けています…
今でも、答えを見つけられずにいます…
でもね、亜也、貴方のおかげで、たくさんの人が生きることについて考えてくれたのよ…
普通に過ごす毎日が嬉しくて、あったかいもんなんだって思ってくれたのよ…
近くに居る誰かの優しさに気付いてくれたのよ…
同じ病気に苦しむ人達が一人じゃないって思ってくれたよ…
貴方が、いっぱいいっぱい涙を流したことは、そこから生まれた、貴方の言葉たちは、たくさんの人の心に届いたよ…
ね、亜也、そっちでは、もう泣いたりしてないよね…
お母さん、笑顔のあなたに…もう一度だけ…会いたい…
To Aya,
It's already been one year, since I haven't been able to see you...
Aya? Are you walking? Can you eat? Are you laughing loudly, and can you speak? Even if your mother isn't at your side, everyday, are you doing well?
As for your mom, It's just, I'm not only worried about that. "Why did this illness choose me?" "For what purpose am I living?" You said such things, didn't you...
For what purpose was your life, in which you shed so many tears, suffering and suffering...
Mom, is still trying to figure that out...
Even now, I am unable to find an answer...
But you know, Aya, because of you, a lot of people began thinking about what life means...
They've started to think that these days that pass by normally are so wonderful, and warm...
They've started to realize that someone near them has given them kindness...
And people suffering with the same illness have began to think that they're not alone...
They did this all for you...
You shed lots and lots of tears, and born from those tears, your words... have reached lots of people's hearts...
Hey, Aya, over there, you aren't crying anymore, aren't you...
Your mom... even if it's only once... would like to see you there, smiling...
昭和63年5月23日午前0時55分
木藤亜也さん25歳で永眠
花に囲まれて 彼女は逝った
May 23rd, 1988, 12:55am
Aya Kitou Eternal Sleep at age 25
Surrounded by flowers, She departed us...
1リットルの涙
1 Litre of Tears...
(This is a page from Aya's actual diary, the reason it was called "1 litre of tears" was because every page's ink was so bled from Aya's tears, and some pages were almost illegible...)
Aya Kitou, Born in Toyohashi City of Aichi Ken (near Nagoya, which is also in Aichi), at age 14 was diagnosed with Spinocerebellar Atrophy, which is a disease where the cerebellum and the nervous system starts to destroy itself, leading to cerebral palsy, and can in some cases, lead to death. Due to things such as choking on your own saliva because you can't control your muscles in your mouth. It is an especially cruel disease, because the Cerebrum suffers no damage at all, and as it appears in people who have lived perfectly active lives, it's almost as if they are trapped within their own body, and have no control over what their body is doing to them.
From the age of 14, until she was 21 (and no longer able to write), she kept a diary, which is now published as a book "1 litre of tears" in Japan. Her words have touched the hearts of millions, as the book was a best seller in Japan, and has projects online currently to translate it into many different languages. There was also a Movie, and a drama made, which is a fiction based on the true events.
One day as Aya was walking to take the highschool entrance exam, she fell, and hit her chin severely. The doctor that treated her noticed no wounds on the hands (normally, a person would put their hands in front of them if they fell) and did some tests, as well as an MRI... and told her mother that her daughter had the disease known as 「脊髄小脳変性症」(Sekizui Shounou Henseishou) or "Spinocerebellar Atrophy"... At the time there was no way to treat the disease, and her mother was told to do what she could to make the best of the time she had left to move freely...
After having gotten into a very difficult highschool, her doctor recommended she start a diary, and write about her life with the disease, so that he could see her symptoms... As she began to atrophy more and more, her friends, and the people at the school were extremely helpful and supported her all the way.
Eventually, her homeroom teacher recommended she transfer schools, stating that their school was not equipped to accomodate such a person. Aya, contemplating the burden that she will likely become to her friends and the people at the school, decided to change schools to a Special Care School...
Her life in the dorms at the Special Care School was good, and the school had a play, in which she got to be back stage, she said 「いつもいつも人のやるのをみてばっかり。でもやれたんだ」"I always saw people doing it, but I was also able to do it"... Having graduated the school, she began a life of going back and forth from her home to hospitals. Beginning rehabilitation, she had a hope of entering society...
One day, she had written in her diary, in big, almost illegible letters (the symbols are a bit complicated) ”わたし結婚できますか。" (watashi kekkon dekimasu ka?) "Will I be able to marry?" and the doctor answered to her "I don't think you will be able to...", and she wrote "Thank you for telling me the truth"...
After watching the entire drama, reading the first couple chapters in the book, and looking up information on Aya... I feel like even though I never met her, that she is an important person in my life. All those things she went through, all the pain, I just wish I could've helped her... What hurts me the most is that I know what it's like to want to walk one way, or grab something, and have your muscles do something completely different....... Luckily I don't have Atrophy, and it's just dormant Cerebral Palsy... and thanks to the rehabilitation I had for a large part of my life, I'm able to live normally, and hug the people I love, and tell people I love them... In the end of her life, she had to use a board with the Japanese alphabet on it and point to letters to speak...
We take so much in this world for granted... but I'd like to think that Aya's life wasn't meaningless, and that it touched me deeply to read her words, and to learn about the hardships she had to go through... I just wish I could have met her and told her thank you...